Thursday, January 19, 2012

"How Do You Do It?"

When people find out I have MS and a child, there's a pause. A look of disbelief, a look of confusion, and then the dreaded question "How do you do it?"

I never know what to say. I hate the question. It's not that I mind talking about my life or my disabilities. I don't. I want to educate people and help them understand. It's just that I don't know what they are asking.

How do I do... What? How do I deal with being disabled? How do I deal with being a mom? How do I deal with life?

Usually I end up saying "I just do." Because really, what else is there to say? If people have a specific question, I wish they'd just ask it. Because trying to explain the whole of my existence when put on the spot is impossible.

But, here. I'll try. "How do you do it?"

I decide what is most important and I focus on that. I live my life by routine. I prepare as much in advance for the day as possible. I don't have expectations of the day. I do it one minute at a time.

When I became a mom I decided that I was going to practice "child led parenting." I decided that what was important to me was that my child feel secure and able to make decisions very early on. I decided that I was going to follow his lead and not try to make his needs fit in to my schedule. 

In practical terms, this just means that I "go with the flow." I don't try to direct my son's activities. I don't, and never had, him on a feeding/sleeping/playing schedule. As a 2 year old, my son tells me when he's hungry, when he wants a drink, when he wants to sleep. He tells me what he wants for breakfast and lunch. I am not in charge of planning these meals, only of making sure we have some of his favorites on hand.

If he wants to play with his cars for an hour? I do not try to direct him to something else. I really only intervene if he is doing something dangerous, if he is hurting me or one of our animals, or if he is getting in to something I do not want him to (my drink, for example, or our dvd collection.) Other than that, he really has free reign.

I am the opposite of a helicopter parent. I do not ignore my child, but I am quite at peace with sitting in my chair or on our couch and letting him run and play freely in our home. When he is in the mood to play with me, we play together. He likes to have me draw for him, for example. So I draw, I teach him shapes and colors. And when he wants to run off, he goes. I am not uninvolved... I am simply involved to the degree that HE chooses. In fact he's pretty fond of telling me to "Go Away" when I am trying to insert myself in to his play.

My son is very independent. This is something that I tried to encourage and foster in him. He knows I am always there when he yells or cries for me. In return he seems to have the confidence to try things on his own and not have to be by my side every minute.

My/our "Routine" is not to be confused with a schedule. It is not about time, it is about the way we do things. I always make up 5 diapers when I first get up in the morning, that way they are ready to go when I need them. I remake them as I run out. I always change my son in the same position in the same room. Because I have everything set up the way it is easiest and most efficient for me. I hate changing him anywhere but home because I get flustered when things aren't where and how I need them. It takes extra effort and energy, which I prefer not to expend.

I pretty much have a routine or preferred way of doing things, for everything in our day. How I get food ready, how I get him dressed, how we take a shower... It's always done the same way, because that makes it easier for me. I think it makes it easier for my son to know what's coming, too. 

I don't make a lot of plans. We just go with the flow and do whatever we need to do. I find it is easier to plan an hour in advance than a day in advance. I can better judge my son's mood, how I am feeling, what our abilities are... It's just easier to know what I think we can accomplish.

"How do you do it?"

I just do. At the end of the day I am exhausted and in a lot of pain. I am short-tempered with my husband, because I work so hard during the day to not be short-tempered with my son. I give all I have to being a mom. That's what matters to me. When I feel that I'm at the end of my rope, I just look at my son and I hold on.

That's how I do it. Because I made the choice to become a mom, and so I have to uphold my end of the bargain.

Sunday, January 15, 2012

The Look

Something I've never gotten used to is The Look. The Look happens when I pull my van in to a disabled parking space, and people look to see who is driving. The Look happens when I get out of my van and people see that I am not elderly. The Look happens when I then climb in the back to get my child out of the van. The Look happens any time that anyone else is judging whether or not they think I am disabled, or they wonder what my problem is.

The Look says "how dare you?" How dare I take up this parking space, I am not old or in a wheelchair. How dare I have a child if I'm supposed to be disabled. How dare I be out in public, taking up space and living my life. How dare I be in their way.

I move slowly. I move purposefully. I try to conserve movement and energy, because I never know exactly how much I have or how much this trip will take out of me. And The Look says "you are in my way, my time and my life are more valuable than yours."

Because of all this, I also move at the pace of my child. My son is 2 year old. He is also quite large. He is 36-37 inches tall and weighs 38 pounds. He is 97th% for height and 99th% for weight. While I can pick up and carry my son, it is not something I want to do often in public. I don't like to carry him far, or when I have nothing to brace against. He puts me off balance and I do not want to drop him or fall over. I only pick him up and carry him when I must. I conserve my energy for just that reason. I always want to be able to carry him if it is necessary.

My son is accustomed to this. He does not ask me to pick him up unless he needs me to. He is awesome at holding hands and understands how we behave in public, he knows our routines.

So we walk at his pace and at my pace. Holding hands across the parking lot, ever vigilant for cars not paying attention. And then we pause inside the store, where I get The Look again as I catch my breath and start the process of getting my child in a cart.

It is not an easy process. I put everything in the cart first. Then I have to convince my son to help me get him situated. He doesn't always like the cart, but it is imperative that he sit in it. So we talk. And I get The Look as I am bargaining with my 2 year old about this. They don't understand. If I pick him up against his will he's going to flail and twist and I am afraid I will drop him or hurt him or fall over. I need him to be cooperative, because that is the only way I can do this safely.

When he agrees, he lifts his arms up and keeps his legs slack. I say "1-2-3-Lift!" and he pushes off with his legs so I get added help from him. He stands in the seat of the cart so I can pause and evaluate. He helps get his legs through the holes and finally, we are done. I thank my son for his cooperation. Which usually gets me another Look. Then I lean on the cart and we go about our business.

The Look is being judged for trying to live life with my child. We do not do things the same way. My 2 year old has a lot of responsibility in his life. He is expected to do a lot of things and to help with even more. Part of why this works is because I treat my son with as much respect as I treat another adult. I keep him fully aware of what my expectations of him are. I thank him when he does what I've asked or when he is helpful. I bargain with him to get the desired behavior. I completely ignore his tantrums because I haven't the energy to address him when he is in that state. I am known for saying "I know you're upset, but this is how it is. When you can talk to me, we'll figure this out."

I hate The Look. Because people have no idea what it is like to live my life. They make judgments based on their biases. They don't even try to comprehend that life may be very different for someone else. I do not give in to my son, and I am not too strict with him. At home, he pretty much has free-reign to do whatever he wants. He knows this. Because at home I can sit in my chair or on the couch and interact with him without worrying about if I'll have enough energy to get us back home safely. At home I know that everything has been made safe for him and I know what he can get in to. At home I have arranged things to be easy for both of us. At home I am in control of the variables.

In public, I am not. In public I am at the whims of everything and everyone else. I don't know if what I want is at the front or the back. I don't know if I'll have to spend time searching for what I need. I have to deal with my son getting distracted and wanting to do other things. I have to be prepared for standing in one place in line, which is harder than walking. I have to be aware of so many more dangers. I am on edge and I'm also getting The Look constantly.

If you've ever given The Look, I just want you to know that I feel it. I'm sure other people feel it, too. I feel your judgment. I feel your scorn. I feel your dislike. And I want you to know that I deserve none of it. Maybe you'd like to live in constant pain with your muscles spasming and your movements being stilted and jerky because your brain can't send signals to your limbs? Maybe you'd like to feel unsteady on the ground because your feet are mostly numb and you can't tell what you're stepping on or where you're stepping?  Maybe you'd like to deal with the guilt that you can't carry your 2 year old everywhere? Maybe you'd like to feel the terror of not knowing for sure if you could catch your child if he chose to run away from you? Maybe you'd like to be judged for anything and everything because you just wanted to get out of the house with your child, no matter how much it takes out of you to do so?

But people who give The Look don't care. That's all I can assume. They don't care who I am or why I do things the way I do. And I can only assume that my life, hard as it can be, must be much more fulfilling than theirs. Because I never have the time or the energy to judge someone else so harshly.

Thursday, January 12, 2012

The Start

I became disabled in September/October of 2006. Before I went to the hospital at the end of September, I was a relatively care-free 23 year old woman. I wasn't thinking about my future, I had just gotten a job I could be good at, I hadn't considered that my life would be turned upside-down.

Funny how things change.

I fell out of bed one morning. And over the course of the next week I lost the ability to walk unassisted. 10 days after that and I was released from the hospital with a wheelchair and a diagnosis of Multiple Sclerosis. My life, as I knew it, was over.

I hid in my parents' house for a year. I didn't know who I was or what I could possibly do with my life. And then, in December of 2007 my grandfather died. My desire to comfort my grandma and my desire to make the most of my life finally propelled me in to action.

I moved out of my parents' house in March of 2008. I moved to a new city with a friend. I met an amazing man in May, a man who saw past my wheelchair and put a lot of effort in to having a relationship with me despite the challenges my disabilities presented. I married him 5 months later in October of 2008.

In January of 2009 I was hospitalized for an MS flare. I completely lost the use of my legs and one of my arms. My new husband stayed at the hospital with me and we spent hours talking about what the future held for us.

So. There we were, I was being told by my doctors that I'd never walk again, that I needed to take a all these medications and I needed to do x, y, and z. Instead my husband and I decided that we should have a baby. And then all the looks started. The hushed tones. The sideways glances. The "How are you possibly going to care for a baby?"

Our answer was simple. "The same way we do everything else - however it works."

I got pregnant in April of 2009. Strangely enough I started walking short distances in the same month. I gave birth to a wonderful baby boy in December of 2009.

And here we are now.

I don't parent like other people. I can't do all of the same things other parents can. I am unable to do many things that other people take for granted.

But my son is 2 years old and his doctor says he is well ahead of the developmental milestones. He is talkative, extremely active, very sweet and polite. He is an expert at independent play, at helping mommy do things, at announcing his needs. My son is very in charge of our day. I don't play on the floor with him, but I sit and we play on the couch or I pull a chair up to a table and we play there. He plays on the floor while I watch. He picks things up that I drop. He carries his own plate to the table. He brings me his dirty dishes. He asks to go out and play and then directs me to sit in my chair. He yells "Mom! Here!" when he wants my attention. And I look, I cheer, I take pictures of him and praise him.

I am not a helicopter parent. Both because I simply cannot be one and because I would rather my child figure things out for himself. But when he falls, I am always poised to get up and rush to him. I say "Are you ok?" And he tells me. Sometimes he walks to me and asks for a kiss where he is hurt. Or he screams for me and I care for him like any mother cares for her injured child.

Our life is very different. But it is also very much like every parent and child relationship. My husband has been extremely involved, when he is not working to support us. He takes night duty, he takes our son our for adventures every weekend so I can relax. He massages me and cares for me in the evenings after our son goes to bed.

And I am fortunate to have such an attentive partner. I am fortunate to have a child with the personality he has.

And in many ways, I am fortunate that my disability gave me a whole new outlook on life and allowed me to find what truly matters to me.

The trials and tribulations of living as a disabled person and the challenges of being a mom are great. I don't know any other people in my position. But I am fine with that. I am confident in my choices and in my place. I don't care if I am one of the many or one of a few.

I am a disabled mom (sort of) walking. This is my path, my adventure, my life.